A few weeks back, I was started on a very very low dose trial of 'Plaquenil'. i was full of hope about this...as my young daughter is doing better than she was at age 15 with her dose of 'plaquenil' and 'aspirin'. I was well read and informed, and knew with my profile and also mixture of five diseases: SLE Lupus, Psoriatic Arthropathy, Sjogrens, Hughes Syndrome and Hypothyroidism - that the psoriarsis part of my disease profile might if I was unlucky, react to this new drug.
I started some while back, with great caution, and the feeling that with every pill, I was dropping some sort of depth charge, but well aware how good it could possibly be for my endless supply of fatigue and other fuss. Also well aware that it appears to be the drug of choice for St Thomas. and is seen as generally helpful. I had also been advised to do this by London Bridge also.
After a week on this I did feel quite a bit worse, but knew I would have to get used to this, however by the end of week two and climbing into week three all hell broke loose. I suddenly awoke one night feeling very sick and wretched and started to come out in the odd spot. By morning this was more than a few, and by the afternoon quite a rash... this progressed fast to a rash and a various telephone calls to London, coupled with a dash to an on duty locum. I explained that I felt rather ill, and as suggested by London Bridge and St Thomas' discontinued the 'plaquenil' and the been prescribed steroids.
By the next day, despite steroids, my face had blown up like a balloon, even eyes, nose and lips.. and the rash over the next few days become head to toe swollen crimson sun burn with hives and blisters on top, including up my nose. This was then followed by psoriarsis from head to toe.
At this point my kidneys started to throb and I had five days of nasty renal colic, having rung the locum to check... her kind advice was rather limited and i was asked if I had a urine infection. With children to look after, and my local rheumatologist away. I decided to sit it out at home, rather than risk the hospital and catching something in what was rapidly becoming open sores. I also did not fancy a long trip to the surgery to be asked about urine infections when it was quite apparent that my reaction and allergy was extremely severe. I did endless searching on line in medical forums to make sure I took nothing to tax my kidneys in any way. I also rang up out of hours and talked to the most senior person I could find about which drugs went with what and what did not, and kidneys and allergy ... basically on my own with this, but prepared to sit it out, in full self sufficiency.
Thankfully I am very lucky, I installed a double sized therapy bath when I moved to my current house. So every day after a gentle shower, I was herded into the family bathroom and dumpted into water softening salts and lavender and left with jacuzzi on for a couple of hours. After a suitable amount of bad language and foot stamping, I then started the cycle of 6 layers a day of neat aloe vera gel.... This process went on for one week, at which point I was then able to add Mfolia ointment to the after bath, gentle moisturising equation. It was agony, but I knew it would get better.
However postman still in a state of shock as for two weeks only able to wear a sheet, and I kept answering the door with my hair on end... (allergy even stripped all colour out of this), and of course a crimson swollen face to top it all off.
I am now 4 and a half weeks after allergy, back on my physio, bad language has abated to a more acceptable level and... not any psoriarsis anywhere, knocked it all back into submission.
However sad though it is that this drug does not work for me..it does work for so many people and that includes my lovely daughter.
I passed the time, reading countless medical papers for my next drug adventure and becoming very good at live chat, this of course coupled with designing elaborate party menus and also only watching hilarious things. Laughter is great for pain relief. I also banned anybody remotely boring from visiting me!.
I am fully on the mend as much as i can be for me... but this one drug not suitable for me!
Mary F x
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Omg Mary!!!!! What an absolute nightmare for you!! So pleased to hear you are feeling better than you were . Its worrying to read the severe effects that medicines can have on people on some people and yet others are fine.
Thank goodness you feeling a lot better now. I am so sorry this drug didnt help you. You had to give it a try. Glad it is helping your baby girl. I currently take it, have done for years, it has helped me. New consultant ( I moved from Jo-Burg to Cape Town) ) insists I change to Plasmaquine......No No No!
Loving the Olypmics. Gives me a reason to watch TV in bed! I am fixated on it, yet despite it being on almost 24 hours a day ( I am an insomniac ) have so far somehow missed every medal won by UK and SA. Not that there has been that many I guess!...
Dear me Mary you certainly go the whole hog? i bet you got a very colourful language dictionary with all that - you have mastered it and patiently it seems treated yourself and it seems infection free so wise to manage at home and what a godsend your jaccuzzi bath - so glad you have recovered such a shame you had to go through so much ;-( yet as always you keep cheerful and i agree laughter is the best medicine you are clearly made of strong stuff hun lots of love kathy xxxx
So sorry to hear you been so poorly, sorry too that the plaquenil did so much damage, all through the hot weeks weather too, must of been pretty awful. So glad you feeling better, I hope you don't react to the next option that the doctors try.
You're such a tough lady, keep smiling and laughing through it! Think if we didn't laugh we'd cry sometimes.
Hi Mary F. So sorry to hear about your awful drug reaction :0( really glad you are making good progress and haven't lost your humour.... You are one tough lady! Best wishes to you x
Thanks.. I did weigh up hospital, but locally things are difficult, as years back I made a complaint locally due to diabolical treatment of my family when my young children had scarlet fever, so.. people I have virtually never met said things they should not have, about myself and children... and I have had some very terrible attitudes at the local hospital, so can only go if there is somebody on with the knowledge of what I have! My rheumatoligst was away and also my own GP, Mary F x
Oh Mary What an ordeal So glad you had your own effective treatment plan. It is a pity that the plaquinel has not worked for you and you have had to go through all that. I believe in the power of humour too I did some training in Provocative therapy which uses humour to treat problems. It was hilarious and very effective. Interesting neuroscience about creating new pathways in the brain too. Also just wanted to mention that my husband has found that a daily dose of cider vinegar has made an enormous difference to his psoriasis. He only gets occassionaly A bit of it on his feet now and that often is because he has lapsed a bit from taking it. Its available from health fod shops I think it is done by Biotta and its pretty cheap. My friend uses a natural remedy site called Earth Clinic which you may have heard of. She read about it there. BTW are you the same Mary that was Turtle on another site and that I met a few years ago at the forum ? Anyway hope things settle down and improve from now Best wishes Ann
Hi there, no, never been Turtle... and yes cider vinegar... but not the supermarket one. I use the natural ones, as apparently the mass produced supermarket ones are pasteurised ... and not so effective... so I get a local East Anglian one. Thanks Mary F x
MaryF, So sorry to hear about your last few weeks and so glad you are on the mend. It just goes to show - you can't keep a good woman down! Keep smiling and seeing the funny things in life - that seems to be what keep most of us going (that and knitting or course)!
Glad you're better. Sorry you went through all this, but for there past several weeks you have been so present and supportive of others on this site who were not faring half so badly. I'm awed.
But gee. . . I was hoping that Duke would give plaquanel a try with me. I have multiple drug allergies. Now I'm not so sure. . .
Please do NOT be put off a trial, what happened to me is a rare reaction! It is worth trying with caution. My trouble is that for all these years, nobody diagnosed a single thing. I did the whole lot, and then had them verified, years of reading. It is good for me to concentrate on others rather than just myself... I read, write, play music, and generally try and provide an uplifting environment for my family. The day I forget the word fun.. would be a bad one for me. Hope you have a safe trial, it is my psoriatic arthropathy which would have put a stick in the plaquenil's cage!!! Mary F x
Wht intrigues me, and urges me to add 2+2 (and I realize I may be coming up with 5) is a sneaking suspicion I and my sister have.
You see,on our Mothers side of the family we find a whole bunch of women who age hyper- gracefully, have hyper dominant, personalities, in a classic passive aggressive kind of way, and all had periods from hell before they had their first child. They all end up with Alzheimmers, though they tend to live into or beyond their 90s. On my Fathers family we have bookish, artsy, tall introverts with autoimmunity issues.
And so my sister and I presume we live in estrogen imbalances meets autoimmunity bodies.
My current arthritis problem got better as i moved into menopause,then worsened, coincidentally (?--obviously I do not think so,) when my doctor changed my HRT formulation to include more estriol and DHEA.
Now I do have an osteopenic hip, so there is a good argument to stay on the HRT. But my body continues to respond so well to naprosyn, which has some kind of estrogen agonist property , that I suspect that discontinuing the HRT wvould be an experiment worth conducting.
And, since you mention having an over-abundance of estrogen, I an wild guessing that I may react to plaquanel the same way.
I'm really looking forward to seeing what Duke Rheumatology Dept suggests.
Don't you look forward to the day when endocrinologists have flow- charted all the hormones in the body and how they all dance together? Then they'll know who can take plaquanel and who can't -like the progress they are making in predicting who is and isn't a match for warfarin?
But for moment, my new internist advised me to come off the Salsalate and then try just 1/2 a naprosyn. I am still experimenting, and it will take a week or so to r/ o the usual ups and downs. but the topical naprosyn cream has done well and 5 days into taking 1/2 a pill twice a day, I am optimistic. Yesterday I biked 15 miles. Today I think I'm going to try the Carriage Trail again and see if this time I can make it the 1.5 miles up and down without pain.
Over the past few mornings my pain level on waking has gone from a 7 down to a 5. Yesterday it was 3 and today, about 1. Progress? ( I've been fooled before. Fingers are crossed behind back and I'm beating --not knocking-- the wooden table.)
But you are right to urge me not to r/o plaquanel. I need some relief from the pain else all those other systems in my body are going to crash.
Gina
-- by the way, Romney IS a twit, Salt Lake City IS in the middle of nowhere, ( not to mention that the Winter Games are not as big a deal as the summer ones) and I think Britain is doing a brilliant job as this year's host! And I loved the Opening Ceremonies! Shakespeare, Blake, Mary Poppins! brilliant! I'd love to acquire a video.
Only complaint comes from my husband that last night beach volley ballers were not in their bikinis but had to cover up more due to the chill. ("What's the point of watching female beach volley ball if the athletes don't wear their bikinis!". I think I responded with a comment about not having such a temp-induced viewing issues when watching men's swimming.)
Sometimes the side effects of a medicine can be far worse than the medicine itself and you sure proved that. Very glad you are on the mend and your sense of humor is amazing, but so truly sorry you had to go through such a horrid mess!
I recently also went through a problem, but minor in comparison. Neurologist decided to raise my Topamax by just 12 1/2 mg. for my migraines and I felt awful and the fatigue was unbelievable. Could not navigate, get myself moving - at all! I called the PA and told her I was stopping it and would deal with the migraines but had to have my quality of life back. I am now moving/talking/walking, thank you very much.
We are sometimes guinea pigs with these medicines; they really don't know how they will affect us until we try them. At the same time, how thankful we must be for them because without them we would be in far worse shape. I think of people in countries who don't have access to such and how they suffer, far worse than we.
Have they decided to try something else for you? - or are you just staying on what you were before? GOOD LUCK!!!!
Oh thanks, I shall retain the 'status quo' currently, and take pleasure from the fact that my teenage daughter is doing well on this drug. I shall rack my own brains and try something else later xx
Mary...all I can do is wish you well....the skin rash must be wretched...I developed a rash below the knees on both legs.(after doing yard work)...had to wake up several times a night to scrub with baking soda and cold water (the least bit of warmth brought out the itching)...and then put on calamine lotion....my MD said to use the "old" calamine lotion without added ingredients (ie hydrocortisone)...this worked the other stuff made the rash worse.....I was also prescribed steroids (pills) for the 1st time in my life.....took several weeks to improve
don't know if this is helpful.......but I take a Benadryl if I am in the yard....and /or if I begin to feel the slightest bit "off"....my own preventative measure....since anti-histamine meds are used to prevent allergic reactions I figured it works on the immune reaction...believe it or not I have not had a 'flare up " so far...... I also take 200mg Ibuprofen every day to address possible 'flareups'due to my ANA issues....and 400mg if I have been doing to much and feel tired.
Thanks.. now rash and psoriarsis free... worked on it night and day, now looking like a new girl again xxx
Forgot for those who do not know...I take Plaquenil 200mg 2x /day and 320mg aspirin....I have been taking Plaquenil for 2 years...so far not problems...eye exams every 6 months...all OK
I was prescribed Plaquenil because I began to feel horrible....weak, dizzy, malaise, headache...as I said to friends like the worst flu coupled with feeling like I had too much alcohol
(and I don't drink....just remember a nasty episode when I was 22..I am 64)
Dear Mary: You were kind enough to welcome me to this site a few weeks ago. I now realize you must have been in the thick of medication reaction when you took the time to do that. I sincerely and humbly thank you for your kindness in the middle of your own crisis. I have the greatest admiration for the individual, humourous, positive, common sense advice you manage in all of your responses whether its welcoming a patient to the site or lending an old APS buddy a shoulder to cry on - on a bad day. I, too, was unlucky with plaquenil and have psoriasis and multidiagnoses, but fortunately did not react that severely to my trial of Plaquenil. You certianly gave me some good ideas to try for breakouts of psoriasis though. That tub must be wonderful for so many aches and pains. Aquatherapy right in your own home, very smart move. Plaquenil just did not work for me. I received no relief nor reaction that I could note. I also did not like it initiating another visit to the opthalmologist to screen for color blindness and loss of sight. Both irreversible. Did they give you that warning with your daughter? I'm hearing about people's success with Plaquenil, but no one is mentioning what my doctor insists is a serious side effect which must be screened for. Is it a standard screen in Britain if you are prescribed Plaquenil? "Irreversible" is too scary for me. I have suffered severe reactions to steroids before. I turned bright cherry red, my face swelled till it was unrecognizable, I grew a hump on my back (no joke). Upon diagnosis I weighed 130 pounds, I am 5"-1". The Prednisone blew my upper body up to look like a midget wrestler you see on TV. My eyes were such slits that my swollen cheeks actually obscured my sight. I took a photo because I didn't think any would ever get worse than that (CNS Vasculitis) and if I could get through that ... I thought I could get through anything. They added chemo (Cytoxan). I lost my hair and two years down the line they found Cytoxan responsible for bladder cancer. (It has returned 8 times within 90 days each time and this is the first 9 month clean run I have ever had..yipee!) The day I reached 220 lbs., I walked (waddled is more like it) into my GP's office and said wean me off all drugs except pain and comfort. At that time, there were over 30 drugs. They GAVE me diabetes.
We have whittled the drugs down to about 6 now and despite having multiple diagnoses that cause pain and general havoc, at least I have the perception that I can make an intellegent decision.
You are one strong woman to have kept your temperment in order during such a severe medication reaction. You certainly have my admiration. apsfa.org This is the link to an American APS organization. I have found it most resourceful in providing other links as well. I pass it along in hopes it provides you with new knowlege the way this site has for me. Too bad we don't all have Skype. We could have weekly support meetings! I have Skype and if I could I'd give you a big hug and barrels of giggles to be opened as needed and tell you all will be better tomorrow. I hope you are not too slippery for a hug with all that cream and oinment on you! Smiles, hugs and a special prayer for good souls such as you. xx Terrilynn
Thanks.. Mfolia very good for Psoriarsis and yes I understand fully the rare eye problems which can come along in the face of plaquenil use, I have my daughter's eyes checked regularly, thanks for your reply. I am not so up on USA sites but this is one I have heard of - which I am told is reliable and good. americanaps.org/ Thanks. Mary F x
Ps as only on aspirin twice a day, I have taken for years a variety of natural anti inflammatories which I hope and think help me calm down flares..! or at least aid some of my well being! x
I just realized you are now back in form. I am so pleased this allergic event has passed and now you know that this is not the drug for you! Better than wondering. You just had to pay a higher cost for finding out. Some days you wonder if its worth the try when you have experienced severe reactions to a "hope this one will do it" new on the market medication. Happy, healthful days ahead! xxoo Terrilynn
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Is it possible to have APS or Lupus with negative blood tests?
What INR self testing machine is recommended and where should I get it from..?!
Angry with St Thomas's
Neurologists and other health care professionals
anything but warfarin, please!!!
